The Too Long Episodes

I am a 31 year old female living in southwestern Ontario, Canada. From the age of around 24 I started experiencing these ‘episodes’. The first one started after finishing exams and getting really drunk on red wine. Really drunk. The next day I awoke to a fog state. After 3 days I called my parents with growing panic that something was really wrong. They took me right away to the university hospital where they carried out a CT Scan. They were obviously worried about stroke. They sent me home with no clue of what was going on. The foggy dream state lasted for 21 days. I felt utterly exhausted and spent the entire holiday break sleeping at my parents, and having severe anxiety attacks wondering what was wrong with me.

Less than 2 months later, I had another episode, this one lasting around 14 days. For the next 4 years I would experience 3 episodes a year, roughly around the same time. Multiple ER trips, referrals to doctors, neurologists, specialists, 2 MRIs, 2 EEGs, 1 ECG, a stress test , countless blood tests, I even had to pee in the dark in a container for a strange test. Diagnoses were thrown around. I had been told I likely had a brain tumour, to I had MS, prescriptions for vertigo, and anti seizure medication and abortive migraine pills had been written, some filled, some tossed after learning of the side effects — why would I want to take a drug that had the risk of memory loss as a side effect? Or a dulling feeling?

Hello…I AM there already! Scared, panicked, feeling stir crazy, worried about my employers, worried what my friends and family thought, worried I was going to get admitted to the psychiatric hospital because people thought I was crazy. Told I just needed to relax, I was too stressed, this was causing me issues. It was all in my head. That I was anxious and prescribed ‘chill pills’ (which I refused to take because I knew something was really wrong). A part of me inside that was naive like a child about humanity, about the compassion and knowledge of doctors or family…or just people who should know better, was deadened. It was a brutish world, and I could only trust one person, myself.

It didn’t help that I was having strange thoughts, or seeing things that would be there, then suddenly disappear. Thoughts like I had telekenetic powers, or that I was seeing things that just weren’t there. But my dad listened to me, and didn’t doubt me. And that was all I needed to press forward. I wanted to crawl into a ball and hibernate in a cave and sleep it out. What I REALLY wanted was a doctor to say ‘would you submit to staying under observation for a few days (or until the episode was over)?’ I had all these tests but I felt like none of them really addressed my issues. My cognitive abilities were impaired, but everyone said I looked just fine. Maybe I could walk in a straight line or stand up with my eyes closed without falling over, but I am telling you, I can’t drive a car, and I can’t trust any of the work I am doing in the office. Frustration.

I am a very independant person, but I think a few people who really knew me, when they started seeing me become very dependant, worried about being left alone (I once walked into my kitchen to see a pot of water on the stove on to boil and swore a stranger had entered my house as it surely wasn’t me who had done this). Those close to me started to come around. And they started to stop panicking with me. They started to just accept I was having these ‘episodes’ (I hate that word now). Eventually I got so sick of myself and these episodes that I would go through an entire 14 day period of confusion and disorientation in my dream state and not tell a single person because I was so tired of it all. But then I panicked because I felt in it so alone and it took so much energy to try try try, to be normal. To focus on the road and the things around me, to double and triple check my numbers or reports. To pretend.

Then after much Googling on my own, discovering the term ‘derealization’ (yahoo! there is a name to my state!), talking to doctors who had no idea but was willing to listen to my independant ‘research’, I settled on what was really going on was a migraine. I have no real pain (that was the kicker). I felt a slight pressure or tension like a rubber band being stretched across from temple to temple, a 3 out of 10. A feeling of fullness in my brain. Delirium, confusion, disorientation. Strange thoughts that related to my vision – feeling like I was seeing things that werent there or looking at something and then looking at it again and it would look different or the bottle would go from empty to full, etc). Changes to my vision, a grey veil almost. Differences in shading. People’s faces looked different (I call them zombies, people look like zombies). Changes to pain and pressure receptors – things were dulled, pain and pressure to my body was dulled. And sleep. Oh sleep. Oh pretty beautiful sleep. You turn on me like a horrible horrible beast.

These episodes ranged from around 10 days to 21 days, with them generally lasting 14 days. But tired. Oh so so soo sooo tired. The more I would sleep, the more dizzy and confused and dreamy I would feel. I started noticing that after a couple weeks that in the evenings I would start to feel, almost — normal. Was it in my head? No… I definitely felt less dizzy and wobbly in my head. And less tired. Then I would go to bed, have odd fast paced dreams, and wake up very very out of it. But the worse I slept, or less I slept, the earlier I would start to feel better. I also noticed that first thing in the morning for a few minutes up to say half an hour I would feel normal then surely, the fog would set in. I started using sleep as the only mechanism to control the episodes. I would make sure that I would stay up as late as I could and get up early. Allow myself only a few hours. but that was hard, as I was SO tired in the morning. Then I would wake up every 2 hours for 15 minutes through the night. I know…I know..it’s weird.

But the good thing is that 7 years later, even though I haven’t gotten a diagnosis, I feel like I know what I have and after avoiding the ‘trigger’ foods on the migraine list (red wine, soy sauce were both triggers of episodes), keeping a regular sleep schedule, not exercising before I eat breakfast, noting when bright lights are bothering me sooner than later, I have been able to go 1.5 years now between episodes.

Unfortunately, 2 times now I have travelled to Mexico on vacation and that was a trigger both times — I guess I wont be travelling to places with such drastic weather changes *sigh*. I have my mom now who understands and believes me, a boyfriend who is fascinated by brain things and has stopped trying to get me to try different things (oh, those well meaning people, they just can really get to you), and an employer that seems to believe what I am going through, which is the biggest pressure that was on me — feeling like I have to pretend and peform, when I can’t see straight. There is hope, never give up, and believe in yourself. And it’s okay to ask for help. I just hope that one day I can get a referral to the headache clinic here in London. My doctor wouldn’t give me a referral because he thought I would be denied anyway, because I get them so infrequently. True, I don’t get them every day, or month. But seriously, lasting 2-3 weeks!!! Isn’t that disruptive enough to a life? Oh well….I just wanted to share my story.

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Comments

OMG! Thank you so much for sharing! I get this too – although not for as long periods – around a migraine. I literally feel like I’m sleep walking or have taken a powerful sedative. I end up sleeping an entire day or days and have the strangest anxiety-driven dreams. I also slightly hallucinate – think I see someone standing there and when I look again, they’re gone. I also get that feeling that my head is being squeezed. It’s like everything is just foggy and off. I’ve never heard anyone share this before – so THANK YOU!!!

I live with chronic Migraines and I have encountered the same symptoms but have not put the pieces together until reading your story… Trigger foods are definitely a factor, I can not eat anything with artificial sweeteners or processed foods. Red wine is a favorite of mine so my husband and I have tested different ones over the years and find that Chianti.. dry wine with the least tannins and a high alcohol content are most tolerated if you must drink wine. Not sweet wines or cheap wines! Also weather changes can cause the fog effect and produce a pain that the medication Imitrex can only take away temporarily. Until the weather pattern has passed through the headache pain will come back and there is not much relief that doctors have found. I receive Botox crown treatments every three months to paralyze the nerve endings in the crown of my head this has reduced my headaches however not the fog episodes that come with weather changes. My daughter who is 22, notices my weird behavior and I tell her it is the side effects of the meds – topamax a preventative I take every morning and night (now I have learned from you it is something different altogether). Also a main trigger that caused me to quit my job as a Graphic Designer is working on a computer. Hours in front of a computer screen does something to the brain that is my most powerful trigger to date…No preventative medicine can help only small amounts of time am I allowed in front of the screen before my head is pounding. My neurologist did say they would reduce as I age. I have had them since I was 7 and they came on full force during menopause. I have been suffering daily for about 5 years and am looking at maybe another 10 until this cycle of aging is over…be diligent, mind your triggers, change your lifestyle, and realize that you are living with a disease and never give up…however…we always have to take things slow and easy… like going to a quiet jazz cub instead of a loud disco dance joint. Learn to wear earplugs when you go to concerts, so at the loudness won’t give you a headache…Coping mechanisms are key …. be creative and Good Luck you are Not Alone 🙂

Get a new doctor, he’s an idiot. Any doctor that mimimizes the effects on your life of migraines by saying “you only get the twice a month”, or saying they’re not that bad, etc etc. – well you should dump that doctor and find a new one. By the way, a neurologist told me the same thing after diagnosing me with “tension headaches”. I get menstrual migraines, lasting 2-3 days with vomiting. I have found a migraine clinic in Chicago, Diamond Headache clinic. Also the words dependent and independent are not spelled with an a. Thanks for your comments.

I just noticed this was featured on the Facebook page yesterday so I wanted to come back and update: 3 days after I wrote my story I was terminated from my job, after working there for 5 years. I had just had another 2 week long episode that kept me home a month before…was that the reason I was terminated? I will never really know, but I do feel it had a lot to do with it. (Fortunately, I was very unhappy there and this led me to have the opportunity to start a business, which I find much more personally satisfying).
Secondly, a month ago I received a letter that I HAD indeed been accepted into the headache clinic finally!! My appointment is in April 2014! A huge victory for me 🙂

I’ve had these episodes, also. At one time (in my 20s) I thought it was just a severe depression, but I think it was the symptoms that caused the depression. I took a few different pills for it, but they didn’t seem to help much. I just pretty much had to suffer through it. Now, I have chronic migraines and recognize the same symptoms along with the pain – sometimes more pain, sometimes less. I would definitely go see a migraine specialist if I were you. Hopefully they will be able to help you!

I have had migraines for 24 years….I have fought tooth and nail to control/understand/get relief/help when needed. One thing you said was that you had issues when you went to Mexico. I have found that my issue with travel is altitude. Anytime my travels require an altitude change(driving or airplane) I suffer for days. I also have an issue with barometric pressure (weather change). I hope that you can continue to travel by allowing yourself time to adjust to your surroundings. Best of luck.

How do you allow time to adjust to your surroundings if say, you are flying in January from Canada to Mexico? The winter before I had flown several times from Ontario to Alberta and back without problems, but yet, flying to Mexico twice it had this affect, and I am not sure how to deal with that other than not travelling via air on vacations.

Woobsie – Some patients have luck with pressure triggered Migraines (these can result from weather and travel) by utilizing a medicine called Diamox or acetazolamide. This is a prescription medicine, and like other medicines there can be side effects and contraindications. However, it is often helpful and might be worth talking to your Migraine specialist about.

Thank you so much for sharing your story with us. Great job on learning about your triggers and avoiding them. Have you kept a migraine journal? This is an extremely helpful tool to find out the triggers and patterns of our migraines. There are pen and paper journals that can be used, or mobile apps for smart phones and pc’s. Migraine.com has a Migraine Meter you may want to check out; http://migraine.com/migraine-meter/. It may be a good idea to see a migraine specialist because doctors are the experts who treat migraine and headache disorders. This article may help you see if you need a new doctor; http://migraine.com/blog/is-it-time-for-a-new-migraine-doctor/. Your doctor doesn’t know for sure you will be denied, so go ahead and ask for that referral! There is a rare type of migraine called Alice in Wonderland Syndrome you may want to discuss with your doctor. Here are some other members sharing their stories about it; http://migraine.com/migraine-stories/leaving-with-migraines-and-alice-in-wonderland-syndrome/. One of the most distinctive symptom of AIWS is something called metamorphosia. This is when our body image feels distorted. When we experience metamorphosia, the perception of our body size in perspective to our surroundings is altered, making us feel like our body has grown bigger or smaller.

Thank you for sharing your journey with all of us.I had episodes like yours in the early years of my migraines.I didn’t know they were migraines either. I would call them “My Brain Fevers”.I would have racing dreams followed by vertigo and vomiting. Then I would sleep for days. The scary part was when I woke up I would have a sort of amnesia. I would forget stuff like my address, social security number, phone numbers. I would forget stuff that was ingrained in my head. It would take a few days to recover. After many years of this I started to get painful migraines and not the brain fevers. It’s been a painful journey both physically and physiologically. After educating myself about triggers and the disease, I’m able to keep my attacks under control. I’m currently on an anti-depressant which has helped the severity of the migraines when I get them.